Kupu Taurangi Hauora o Aotearoa
Health and Disability Consumer
Representative Training
Evidence base
Welcome and introductions
Who you are
Where you’re from
What you want to get out of the training today
• Your experience
• Roles &
• Meetings
• The NZ health and
• Defining consumers
• Quality improvement
• Consumer
• Leadership
• Co-design
• Peer support
Health and
disability context
Evidence base
• Inequities
• Research
• Clinical trials
Evidence base
Health and
• Inequities
• Research
• Clinical trials
Goals for the day
• To understand the cultural context and equity issues
for different socioeconomic and ethnic groups in
New Zealand’s health and disability sector.
• To increase your knowledge about research in
health and disability sector as the evidence base for
change and improvement.
• To learn the processes of clinical trials and how you
can be involved in these.
(New Zealand Medical Association, nd)
Health equality
A description of ‘sameness’ in
Health equity
The absence of systematic
disparities in health between
groups with different levels of
Health inequity
The presence of systematic
disparities in health between
Health inequities in New Zealand
Health inequities are defined as:
‘... differences which are unnecessary and
avoidable… and are considered unfair and
unjust. They do not occur naturally and are not
random but are the result of social and
economic policy and practices.’
(Ministry of Health 2004)
Health inequalities in New Zealand
There are significant inequalities in health between
socioeconomic groups, ethnic groups, people living
in different geographical regions and males and
females. (Reid & Robson 2007)
Ethnic identity is an important dimension of health
inequities. Māori and Pacific peoples experience
lower life expectancy and health disadvantage
across most mortality and morbidity indicators
compared with pākehā. (Harris 2012)
Inequities in health for Māori
and Pacific peoples
Māori populations still have higher levels of unmet
need for GP care than non-Māori and receive a
lower quality of care under treatment for some
conditions. (Ministry of Health 2010)
Compared with the total New Zealand population,
Pacific peoples have poorer health status across a
wide variety of measures, including child and youth
health, risk factors leading to poor health and longterm conditions. (Ministry of Health 2010)
Health inequalities for migrant,
refugee and Asian communities
New Zealand’s migrant, refugee and Asian
populations are increasing and facing increasing
health issues. (www.moh.govt/asian)
Group workshop:
What are the barriers (if any) to accessing
health services for these population groups?
Addressing inequalities
The district health boards have a statutory
responsibility under the New Zealand Public
Health and Disability Act 2000 to:
• reduce health inequalities in their regions.
• improve outcomes for Māori.
Next three topics
Health and disability research
Clinical trials
Consumer involvement
Health and disability research
The Health Research Council of New
Zealand is a Government agency
responsible for managing the
Government’s investment in health
research. (www.hrc.govt.nz)
Ethics of including
consumers in research
The Health Research Council (HRC) is committed to ensuring
that all research involving human participants is based on good
science, meets ethical standards and complies with
international best practice.
To achieve this:
• all health and disability research involving human participants
funded by the HRC requires appropriate ethical approval from
an approved ethics committee in New Zealand
• HRC-funded clinical trials, innovative treatment evaluation or
community intervention studies are adequately monitored, to
ensure the safety of participants and the integrity of the
collected data are protected. (www.hrc.govt.nz/ethics-and-regulatory)
Accessing research funds
Health and disability researchers can access
funds from a range of organisations including:
• District health boards
• Cancer Society of New Zealand
• New Zealand Breast Cancer Foundation
• drug companies
• private organisations, such as the Hugh
McKenzie Trust
• Lottery Grants
Examples of funded research
1. ‘Mechanisms of obesity and type 2 diabetes;
insights from bariatric surgery’
12 months, $83,333, University of Otago
2. ‘Health housing index and Māori health’
4 months, $5000, Massey University
3. ‘Towards a Pacific Island definition of deliberate
self harm’
10 months, $10,000, University of Auckland
Cochrane Consumer Network
This website has three very good videos
about consumer involvement in health
research and evidence-based care
Consumer involvement in research
Active involvement by consumers:
• must include informed and explicit consent
• benefits:
– the quality and direction of research itself
– the research development process
– people affected by health and disability
Consumer involvement in research
‘Consumer involvement in research relates to an
active relationship between consumers and
researchers in the research process and leads
to research of greater quality and clinical
relevance due to the unique perspective that
consumers bring to a research project.’
(Boote et al 2002)
Why is the consumer voice
important to health research?
• Helps promote reliable, relevant research important
to consumers and carers.
• Presents the needs and views of consumers to the
research community.
• Encourages research questions to include social
and emotional aspects of health often missing from
clinically led research.
• Ensures issues important to consumers are
identified and prioritised.
Clinical trials
A clinical trial is defined as a prospective
scientific experiment usually conducted to
assess the safety and effectiveness of an
intervention in groups of subjects.
Interventions can be: diagnostic, preventative or
therapeutic, and can include drugs, biologics,
medical devices or methods of screening, or
procedures to improve the quality of life.
Randomised control trials
Patients are assigned at random either to receive a
new drug (the standard treatment for that disease), or a
placebo (that is, a sugar pill which has no effect).
These are followed up in exactly the same way in terms
of care and treatment received (for example,
procedural tests, outpatient visits) and then compared.
Randomisation helps to ensure the groups in the trial
have similar characteristics, making it easier to
compare outcomes between groups.
Benefits to consumers
• Access to a novel treatment before it is widely
available or access to the global standard
comparator (which may not be freely available in
New Zealand).
• Close medical oversight and regular access to study
nurse and physician.
• Close scrutiny of adverse events.
• Provision of care within a health care facility
committed to improving best practice.
Example of a clinical trial
The Australia and New Zealand Breast Cancer
Trials Group conducts an independent,
collaborative breast cancer clinical trials
research programme. Consumers with an
interest in breast cancer clinical trials research
are encouraged to join IMPACT – Improving
Participation and Advocacy for Clinical Trials.
Two examples of clinical trials in
New Zealand
These are currently being conducted worldwide,
including in NZ by Roche NZ:
• A study of a drug for patients with uncontrolled
asthma on inhaled corticosteroids.
• A study to compare subcutaneous versus
intravenous administration of a drug for patients
with moderate to severe active rheumatoid
• Not everyone gets treated the same or has equal
access to health and disability support services, and
this can result in inequalities for Māori, Pacific
peoples, Asian and other minority groups.
• Health science is complex and ever-changing, with
new research contributing to new treatments.
• Consumer involvement in setting up research is
important and so is the opportunity to be offered the
choice to give informed consent to participate in
clinical trials.

Evidence base - Health Quality & Safety Commission